Updates on my voyage
6/2/20
My voyage begins here. I was working with a patient this morning when I began having trouble getting words out. I went back to my office and my boss and a co-worker noticed that something was wrong. Thankfully, they took me to the emergency room. It was during this ER visit when a CT scan revealed that I had a brain mass the size of an orange that would need to be immediately removed.
6/5/20
I had a left frontal-temporal craniotomy surgery performed to remove as much of the tumor as possible. The neurosurgeon said that about 98% of my tumor was resected but I needed to wait to get pathology results to find out if the tumor was benign or malignant.
6/9/20
I spent five nights in the hospital recovering from my surgery. I had therapy with PT, OT (whoop, whoop) and SLP to help recover my attention, speech, mobility, sequencing, and processing abilities. My biggest issues were with word-finding and abstraction, and I am forever grateful for the speech therapy team. My co-workers all cheered for me as I was being discharged from the hospital on my way out the front doors!
6/12/20
Received news that the initial pathology report indicated that my tumor was a grade 3 anaplastic actrocytoma. Still awaiting the results of a second opinion on the pathology report.
6/14/20
In a crazy turn of events, I found myself back in the ER with terrible pain in my abdomen. After running some tests, I was diagnosed with a kidney stone which is not believed to be linked to my tumor or the surgery. “Just bad luck”, the ER doc said!
6/17/20
I had a follow-up appointment with my neurosurgeon where I learned the second opinion pathology results, classifying my tumor as a grade 4 Glioblastoma. I spent the rest of the day in doctor’s appointments, one of which was my first appointment with the medical oncologist to discuss the standard treatment plan - 6 weeks of radiation and chemotherapy. This day marks the start of MANY phone calls a day, including the hunt for clinical trials, and just the beginning of my overall treatment.
6/23/20
I had my first fertility appointment today to learn about the process of freezing my eggs since chemotherapy can cause women to become infertile. Not only would freezing my eggs be incredibly expensive, it would also delay my chemo and radiation treatments which is not something my doctors recommended. I ultimately decided not to freeze my eggs. However, I continue to explore different fertility options.
6/24/20 - 7/6/20
This week was BUSY! I sent my tumor slides to different hospitals for additional opinions, I began consults with potential neuro-oncologists, lots of virtual doctors visits and many, many phone calls. I researched a lot about GBMs and the clinical trials available to me. I was vetting trials at Duke, John Hopkins, VCU, Lenox Hill, and UVA. I was denied from the Duke trial and didn’t hear back from John Hopkins. The VCU trial required results of mgmt testing, which I did not have and could not acquire in time to start the trial. There were no trials available for newly-diagnosed GBM at NIH, MD Anderson, and MSKCC. At this point, I started focusing on early phase trials I had heard about at UVA and Lenox Hill.
7/6/20
Today was my first day of chemo and radiation. I am scheduled to have radiation 5 days a week for 6 weeks and take chemo orally everyday for a year. The radiation process requires me to wear a tight mask so that I cannot move my head even 1 mm during treatment. My radiation treatment involved 7-9 laser beams targets at my left frontal temporal lobe of my brain. Radiation lasts about 6-8 minutes each day. However, it ended up lasting more like 45 minutes a session due to waiting times, technical errors with computers and machinery, and making sure my mask was in the correct position for treatments which involved lots of re-adjusting.
7/19/20
A couple weeks into my chemo and radiation I started to feel the crappy effects of treatment. The symptoms that were the most challenging for me to face were fatigue, constipation, and hair loss. No one could prepare me for how tired I would be. To think that in February 2020 I was on a snowboarding trip and that in March 2020 I was preparing for a hiking trip to trek Macchu Picchu in Peru, you would be surprised to hear that walking from the living room to the kitchen would some days be a challenge for me. Five hour naps were easy..and as an OT who knows about sleep hygiene, I would never recommend that to anyone! Being on the other side of the patient-client relationship has changed my point of view on just about everything medical-related.
Dealing with constipation, I never imagined that I would have to keep up with so many laxatives, stool softeners, and enemas…including my own digital disimpaction...if you don’t know what that is, please don’t Google it.
Lastly, hair loss. I would never consider myself a very vain person but when it came to losing my hair, WOW that was hard. I cried and cried and cried. It felt like an identity crisis. And I met a very wonderful lady at Planet Hair who helped me cope with this, and I have a fabulous cranial prosthesis to prove it! I would say I am still learning how to cope with this.
7/22/20
I met with UVA today to learn more about their focused ultrasound clinical trial, which is still in early phases in the United States. It has been used on humans to treat essential tremors, however has not been used on humans to treat GBM before. This trail would require me to go to UVA once a month for 6 months, get my head shaven, be given a local anesthesia so that 4 pins could be placed into my skull to attach my skull to a membrane. This membrane would then be attached to another membrane and then my head would be placed in a water bath (ultrasound has better permeability through water). Then a “decked out” MRI machine would provide the focused ultrasound, a lower energy than what is typically used to treat patients with essential tremors. They would then give me an IV infusion with a drug called Affinity to create micro-bubbles in my brain, allowing my oral chemo medication to pass through the blood brain barrier more readily. In China and Korea, this study is in later phases with patients with GBM. US is a little behind in this research; therefore, in our country, it has only been done on Parkinson’s patients for essential tremors and also been used for Alzheimer’s disease. Still debating on whether or not to participate.
8/12/20
I think I have a loose screw in my head, metaphorically but actually in reality now. I have a bruise on my forehead and I can wiggle around this unidentified foreign object. I am not sure what type of plates and screws they used to put my skull back together, but regardless I made an appointment with my neuro-surgeon to get this assessed. I had an appointment with my medical oncologist today to discuss next steps (medication schedule, return-to-work, etc.). I found that I have a 4 week break before I have to take my oral chemo medication again!
8/14/20
Today was my last day of radiation. The medical team let me keep my radiation face mask because some people turn it into art. Not sure that I’ll be finding inspiration there, so will probably recycle. I got to ring a bell 3 times like other patient’s who have had radiation there do, so that felt good and I was relieved for this part to finally be over!
8/17/20
Today is the first day I did not have to wake up and take my oral chemo medication. This is called an adjuvant phase, or rest phase. I will begin a more intense regimen of chemo in September. I’m exploring a treatment plan that would essentially repurpose FDA approved medications and supplements that may help fight GBM.
8/25/20
I have an exciting update today! I have partnered with a local RVA jeweler to design a line of bracelets to help raise money for my medical bills and raise awareness of glioblastomas. I am SO excited about this opportunity. Please check out the line and make a purchase if you’re able to. For every bracelet sold, I get $10 towards my fund. Visit CYN’s Diamond bar by clicking here.
8/26/20
Today was my first day back at work. I am now back in the full-swing of a Monday-Friday, 40-hour work week. I am happy I chose to return on a Wednesday to ease my way back in! The hospital has gotten much more busy since I took my FMLA leave of absence. I am temporarily working in the lymphedema clinic on light duty before I return to direct patient care in just a couple of months. I am very appreciative that my boss has worked with me to find reasonable accommodations. I also started exploring counseling services at BetterHelp.com and got paired with an awesome counselor named Sabrina. I am looking forward to my upcoming sessions.
8/31/20
Transitioning back to work has been challenging, but I am doing my best! I get the pleasure of working with a woman named Valerie in the office, and she is the most patient, kind, caring, and selfless human-being I have ever met. I love Valerie. She makes me want to work harder to fight not only for our patients, but also for myself and my own challenges with our hospital’s new insurance policy. My current situation has also allowed me to step back and look at insurance policies, and the US healthcare system in general, from a different perspective. You know what they say, don’t hate the player, hate the game. All I can do is keep fighting.
9/1/20
My insurance company, Medical Mutual of Ohio, has been extremely difficult to work with and it saddens me. I wish people knew more about my diagnosis so that they could help me advocate for myself. It is hard for me to understand how I am a healthcare worker with an insurance plan provided by my own hospital, that seemingly has no regard or concern for my situation. Medical bills just keep coming in the mail, and it has been overwhelming to come to terms with the cost of having brain cancer.
Kendra Paabo, from the Brain Tumor Network, has been essential for me. She not only reached out to me when she heard about my diagnosis, but has done everything possible to make sure I don’t have to deal with the stresses of battling insurance coverage while still juggling doctor’s appointments, lab-work, MRIs, and returning to work. I don’t know what I would do without Kendra or without The Brain Tumor Network in general.
9/8/20
Today I had my first MRI since June 6th. The results showed no disease progression! My midline shift has gotten better and my brain looks just about as good as it can after brain surgery! YAY! I will continue to get MRIs every 2 months to monitor brain tumor growth.
9/10/20
Today I had an appointment with my oncologist to further discuss the results of my MRI and my new medication regimen. I will begin DOUBLE the dosage of TMZ (my oral chemotherapy medication) on 9/20/20. However this time, I will be on 28 day cycles where I take TMZ the first 5 days of the cycle, and have the following 23 days off of chemotherapy. This will proceed for 6 cycles with blood work before and after each cycle and MRIs every 2 months.
In the mean time, I am also working with Dr. Mary Jo Dimilia who has developed a medication plan for me involving the use of off-label drugs/re-purposed medications to help the TMZ cross through the blood brain barrier. She has also included diet suggestions and ways to combat stress in her plan for me. I am paying for her services out-of-pocket. Clinical trials do not fund already FDA-approved medications (at least not in my situation).
I also got the flu shot today! Since the vaccine is attenuated, it is safe for me.
9/14/20
This is going to be the start of a busy week! I will have to balance getting more blood work done, going to work full-time, having 3+ doctor’s appointments, and exploring the Brain Tumor 5k in Richmond, VA (I will be trying to make a team, if I have time!). I am also coordinating with a pharmacy in New Jersey for some of the off-label drugs prescribed to me by Dr. Dimilia. On Thursday 9/17/20, I will overnight-express ship my MRI discs for my neuro-oncologist to review!
9/22/20
Today is my birthday! Last weekend, I went to Lake Moomaw and stayed at a VRBO with some friends. We went on a hike and saw the beautiful lake. We also ate BBQ at Sam Snead’s restaurant and explored the Homestead across the street! Tonight, I have dinner plans with my boyfriend. This weekend, I plan to get brunch with some friends. YAY for the fun stuff!
9/23/20
Today I became an LVAD (left ventricular activating device) superuser at work to help train/renew our therapist’s annual LVAD certifications to be better able to serve out cardiac patients. I also renewed my OT license this month and received my papers in the mail!
Now: Taking this Saturday morning (9/26/20) to reflect on how far I have come on this journey to battle brain cancer. I have great friends and great family who I could not get through life without. I am so appreciative of all the support and positivity I have received from people I do not even know. I am seeing that this world, however messy and dark it may seem, has GOOD. If you are reading this, I know that it may be easy to become jaded in the midst of a global pandemic, political uproar, climate change, cancer and other chronic illnesses, mental health, death, financial stress, so and so forth. Please continue to know that as long as you have hope, faith, and care for human-beings, things will get better. Maybe not in the world outside, but in your heart.
I continue to pray each day for peace in this world, peace in my heart, and peace for anyone I encounter. I encourage everyone to vote this November, accordingly.
11/04/20
I can’t believe it has already been over a month since I have last posted! Time has been flying by. This past October, I continued working in the lymphedema clinic, however I plan to return to the main hospital performing my normal job roles and responsibilities next week. I have still been battling insurance claims but Kendra from the Brain Tumor Network continues to help me fight relentlessly! I am still seeing my counselor from BetterHelp.com and she has been so extremely important for me. My most recent blood work looked decent (although blood counts are lower), and my next MRI is 11/09/2020. My follow-up doctor’s appointment will be 11/11/2020.
I want to thank everyone who participated in the Mam’s Jams Fundraiser and I hope you loved her candles! I also want to inform everyone about the upcoming 2020 Virtual RVA Brain Tumor 5k! If you are interested, you can register individually or form a team! For more information, please visit https://events.braintumor.org/rva-brain-tumor-5k/. Hope to see you all posting #RVABrainTumor5K.
1/15/2021
I hope everyone had a Happy Thanksgiving, Happy Holidays, and a Happy New Year! Although gatherings were smaller this year, I think this time spent with family and friends was the best yet! I truly cherish being with my loved ones and I continue to be grateful for all the love and support that never ceases to come my way.
Medical Updates: My MRI 11/09/2020 and my most current MRI 1/11/2021 were both stable, giving me hope for future imaging! I will continue to get MRIs every 2 months. I begin my last cycle of chemo 2/7/2021 and fingers crossed that will be the last of it! (Or at least a long break).
Life Updates: I have had the opportunity to go on some incredible hikes in the Shenandoah recently and it has been fun exploring nature. I also started guitar lessons a couple of weeks ago and I am looking forward to discovering my artistic capabilities.
I am back to work as an Occupational Therapist full-time and it has been great being able to treat patients and do what I love doing again. Times have definitely been stressful with the increase in COVID-19 cases we have seen. After my chemotherapy ends, I am hoping to get the vaccine!
I am still collaborating with my case managers and with Kendra from The Brain Tumor Network to navigate my health insurance claims and appeals processes. It is a work in progress!
I am looking forward to the inauguration of our new President, Joe Biden, on 1/20/2021. I hope everyone has a great 2021!! Sending love to you all!!
3/18/2021
I hope everyone had a Happy St. Patrick’s Day!
I had my most recent MRI 3/11/2021 and everything still looks stable. I am still working full-time, spending time with my friends and loved ones, and thanking God for each day.
Special request that everyone sends happy energy to my Daw-Daw (my grandma on my mom’s side) who is turning 81 on March 27th! I can’t wait to see her now that I am fully COVID vaccinated.
Sending love to all!
6/11/2021
This MRI showed some growth. The doctors are unsure whether or not it is radiation necrosis or tumor. Will keep an eye out.
7/12/2021
This MRI showed more growth.
8/10/2021
This MRI showed more growth with concern for tumor growth. I have been advised to begin looking for clinical trials.
9/8/2021-9/14/2021
I went on a trip to Arizona! I climbed Slide Rock, the Antelope Canyon, Horseshoe Bend, the Grand Canyon, Devil’s Bride, and we did a pink Jeep Tour with my friends Jordan, Martina, and Sarah! I stayed with my friend Nicole in Phoenix the last night I was there and we went to the Van Gogh exhibit. And I really good place for tacos for dinner!
9/24/2021
I am beginning a clinical trial at Duke University. This trial will include a 72 hour injection of an immunotherapy drug labeled D2C7 along with another 7 hour injection of a drug called anti-CD40. I am getting the catheter placed in my head to administer the injection on 9/27/2021 and it will be removed 10/1/2021.
9/26/2021
My roommate threw me a wonderful birthday party (my birthday was 9/22 but she threw it today because I had to come back to Richmond for a bridal shower on 9/25) ! I had so many friends there and it was a great day.
9/27/2021
Catheter was inserted today! I will be getting the injection of the course of the next couple of days.
10/1/2021
Catheter was removed today and DAMN that hurt. They did not give me any pain meds. OUCH!
Later that day, I was discharged from the hospital at about 10:00 am. We left Durham around 11:00 am and I got home around 2:00 pm. Had to call the ambulance at 5:45 pm due to me loosing my ability to speak and the sensation on my right side.
CT showed a 3 mm midline shift in my brain.
10/2/2021
I got an MRI today revealing a 4 mm midline shift in my brain.
10/3/2021
My brother Alec passed away. May he rest in peace.
He was in the hospital for 4 days and the cause of his death has still not been determined. He died an hour after being discharged from the hospital and my mom found him. It is a true tragedy.
10/5/2021
I was discharged from St. Mary’s today. I will be having people stay with me 24/7 post discharge.
10/8/2021
I had to be put back on Decadron (2 mg) and now 6 Keppra pills (500 mg) a day. This is because of some seizures I was having an episodes of sensation loss on my right side.
10/13-10/14/2021
I went to my follow-up appointment at Duke to get my stitches removed. We are going to try to wean me off the Decadron by 0.5 mg per week beginning 10/22. I am not sure how much longer I will need to take the 6 Keppra pills.
I plan to have my next MRI 10/26/2021 at 7 am. My appointment at Duke will be the following day on 10/27/2021. Please everyone pray for my brother who is in heaven and for me on my continued journey. Thank you so much.
10/26-10/27/2021
I had my follow-up MRI and doctor’s appointments and they all agree that my MRI is showing what is is supposed to at this point! Hopefully only up from here.
01/02/2022
Happy New Year everyone! :) I hope everyone had a wonderful Holiday season with friends and family. I am truly so grateful for all of the love and support I continue to get from the people around me on a daily basis.
Update: I went back to Duke 12/2/21 and they told me my tumor had grown in size, however that is what they would expect to see in the first 9 weeks of the clinical trial. I got weaned down to 4 Keppra pills and NO steroids). I had a wonderful, challenging, and mostly beautiful Thanksgiving/Christmas with my family. We decided to pass around a wooden box and write memories of my brother, which really helped the process of healing. I am still recovering and of course always will be, but being around family and sharing our feelings and emotions helps. Work has had it’s own set of challenges; however I am still lucky to be alive and have the ability to work!
I rang in the New Year with some new friends, dolphins, and with a fresh outlook on life. Being around people who are supportive and positive always puts me in a warm place. I feel good going into 2022 with the resolution to continue to find and spread peace and joy.
Auld Lang Syne!
1/18/2022
We went to Duke for our January visit. These results did not show what was to be expected from the MRI.
2/9/2022
I started throwing up since February 9th.
2/21/2022-2/24/2022
I had my third surgery since the Duke clinical trial. It was a left tumor debulk.
3/16/2022- 3/22/2022
I visited Tulum, Mexico for my friend Susan’s bachelorette party.
3/24/2022-3/26/2022
I was hospitalized for vomiting.
3/30/2022-3/31/2022
I began Avastin, a two week chemo infusion and Lomustine, a 6 week chemo infusion.